About Me

I am a girl who fell in love, got married and wanted to have a regular ol' ordinary family. What I ended up getting was everything but.
This blog chronicles our journey as a family who was blessed with a very special child.
From the day we found out that she had only a 5% chance of living to the present, life has been a true roller coaster of emotions. And most surprisingly, more rewarding than I ever thought possible.
Click here to contact me.

The Harlie Fund

Due to the requests of many caring people, our family set up a legal trust fund, "THE HARLIE FUND" to help with Harlie's care. You may click here for more information or click on the donate button above.

The Harlie Crew

We invite each fan of Harlie to join the following initial crew members and commit to make a monthly contribution to The Harlie Fund.

With Christy's willingness to share, we have worried about, prayed for and rejoiced in the accomplishments of a remarkable girl. The members of The Harlie Crew together show their support by contributing monthly. If you would like to join us, please call Bill Jeffries at (804) 288-1672.

Thursday, February 21, 2013

So, I mentioned a while ago that I wanted to tell you about the book, Wonder, by R.J. Palacio.

I read it months ago. But, as my life is, I never had the time to write about it. Well, Murphy and I started reading it about a week or so ago. Which is kinda weird because we started it about a week before he came home and said he was supposed to read a chapter book (that wasn't a Diary of a Wimpy Kid book) for school. Awesome timing!

Anyway, here's the gist of the book in brief:

It's about a 10-year old boy named August. He has a craniofacial syndrome that has him looking pretty horrific. In fact, he says, "I won't describe what I look like. Whatever you're thinking, it's probably worse." Because of his medical challenges, he's been home schooled his whole life. In the book, he goes to school for the first time and enters the 5th grade. He has a wonderful mom and dad and an older sister, named Olivia (or Via, for short). The book is written from August's point of view for the first part. Then his sister's point of view, then his friend's, etc. It's pretty awesome.

The background of the book is that the author was at an ice cream place years and years ago, with her two boys who were young at the time. A little girl with a craniofacial syndrome and her mother came in, and the author, trying to prevent any embarrassing remarks from her boys, high tailed it out of there. In her defense, she really was trying to be sensitive. Unfortunately, the little girl and her mom, knew very well what the author was doing and as the author walked away she heard the girl's mom say to the girl, "I think it's time to go home now." Apparently, that moment really affected her. She was not proud of the way she handled the situation. And she was filled with regret. Years later - she wrote this book.

One interesting note - I read an interview with the author and she was asked how come she never wrote from the mom and dad's point of view. Her response was that their perspective would be too heavy for the book. Amen. I know that to be true.

I have to say that I am SUPER impressed that someone who doesn't have a child with special needs could be in touch with so many emotions that we (a family with such a child) feel. I really could talk forever about this book and how I feel about it. But, I won't. You're welcome.

However, Murphy and I were reading it Tuesday night, and while I was reading this chapter, it took everything in me to stay strong and not burst out into tears. I just have to share it with you...

This is Via's (August's big sister) first time speaking in the book.

A Tour of the Galaxy

August is the Sun. Me and Mom and Dad are planets orbiting the Sun. The rest of our family and friends are asteroids and comets floating around the planets orbiting the Sun. The only celestial body that doesn't orbit August the Sun is Daisy the dog, and that's only because to her little doggy eyes, August's face doesn't look very different from any other human's face. To Daisy, all our faces look alike, as flat and pale as the moon.

I'm used to the way this universe works. I've never minded it because it's all I've ever known. I've always understood that August is special and has special needs. If I was playing too loudly and he was trying to take a nap, I knew I would have to play something else because he needed his rest after some procedure or other had left him weak and in pain. If I wanted Mom and Dad to watch me play soccer, I knew that nine out of ten times they'd miss it because they were busy shuttling August to speech therapy or physical therapy or a new specialist or a surgery.

Mom and Dad would always say I was the most understanding little girl in the world. I don't know about that, just that I understood there was no point in complaining. I've seen August after his surgeries: his little face bandaged up and swollen, his tiny body full of IVs and tubes to keep him alive. After you've seen someone else going through that, it feels kind of crazy to complain over not getting the toy you asked for, or your mom missing a school play. I knew this even when I was six years old. No one ever told it to me. I just knew it.

So I've gotten used to not complaining, and I've gotten used to not bothering Mom and Dad with little stuff. I've gotten used to figuring things out on my own: how to put toys together, how to organize my life so I don't miss friends' birthday parties, how to stay on top of my schoolwork so I never fall behind in class. I've never asked for help with my homework. Never needed reminding to finish a project or study for a test. If I was having trouble with a subject in school, I'd go home and study it until I figured it out on my own. I taught myself how to convert fractions into decimal points by going online. I've done every school project pretty much by myself. When Mom or Dad ask me how things are going in school, I've always said "good" - even when it hasn't always been so good. My worst day, worst fall, worst headache, worst bruise, worst cramp, worst mean thing anyone could say has always been nothing compared to what August has gone through. This isn't me being noble, by the way: it's just the way I know it is.

And this is the way it's always been for me, for the little universe of us. But this year there seems to be a shift in the cosmos. The galaxy is changing. Planets are falling out of alignment.

~~~~~~~~

So, after I finished the chapter, I paused. I asked Murphy if he understood where Via was coming from. Of course he agreed. And then he said, "Like you missed my concert because you had to go to school with Harlie."

Yes. Yes, that just happened like two weeks ago. He went on to tell me, "But Daddy waved at me between every song. And he videotaped it so you could see it, too." Break. My. Heart.

Murphy asks for help with his homework. And he definitely needs help with projects and stuff. But, I will say, that he doesn't complain. He never has. He has never once said anything about the amount of attention that Harlie gets vs. the amount that he gets. Not once.

There are SO many challenges when you have a child not just with special needs - but who's medically fragile, as well. There are so many, it's hard to ever try to describe it to someone who doesn't live the life. Not one family member is spared from heart ache. For yourself. For Harlie. It's just so freaking complicated.

I'm so thankful to have this book to open up a bunch of really important conversations between me and Murphy. Honestly, I think this is a fantastic book - even if all of your children are healthy and beautiful (you lucky dogs). It teaches kids about kindness and the importance of talking to parents about stuff that goes on at school. I will say that last night Murphy didn't want to read it. He said it was getting kinda sad. Which it certainly does - and I would assume even more so for us, since we kinda feel like we're reading about our life, sort of. But, I told him what he's sad about in the book right now, gets better. I think the book was written for kids, too, so it doesn't stay sad for long. So, we'll pick it up again tonight. Anyway, I highly recommend it.

On the Harlie front, she's freaking sick again. I had turn on the oxygen while she was sleeping. So, she hasn't been to school since Monday. We had her IEP meeting yesterday. And she has her follow-up appointment from her BAHA surgery this morning.

7 comments:

Eric read this book for school last semester. He didn't really offer much in terms of what he thought of it, only to say it was a good book. It is good that it serves as a means of communication between you and Murphy. Eric has just recently expressed some of what he is feeling because of Jack and, quite frankly, Mary is just now displaying the effects of growing up with special needs siblings (many things going on around my house that I don't share publically). People say that our kids will be better people because of they have special needs siblings and I don't disagree with that - but, it's not as simplistic as the statement makes it out to be. It's a tough road for our non-special needs kids. Our other kids will tell you that they would have been good people without special needs siblings - just like we've (or at least, I've) raged on more than one occasion that I too would have been a good person without having to experience this life! Anyway, Christy, we could talk for hours about all of this ... over a pitcher of some alcoholic beverage. :) I look forward to the day we can actually do that. I'm just not sure when we are going to make it happen this year.

I read Wonder this Summer and loved it, I too have a son with Goldenhar Syndrome and keep up with how Harlie is doing on your blog. Hope she gets to feeling better. and tell Murphy to stick with it it does get better!

Reading your blog post and the excert may put a firecracker under my butt to take this book out of the drawer and read it, so I can then read it to Nathaniel. This will almost be like a therpy in itself, validating all of the emotions that we as a family have to endure.

Sorry to hear that Harlie is sick again. We have just gotten Abby better after about 4 week of being sick. Apparently, she likely had a bacterial flu that only responded to a particular antibiotic - it's never the usual stuff!!!

Oh Christy that is a great and touching post. I hope you don't mind if I link to it on my blog. I'm glad it opened up conversation between you and Murphy. They are tough emotions but I think it's important to be able to talk to our kids about this stuff.

Like Ann, I hope one day we get to have a long conversation about it in person, with alcoholic beverages. No one can get it, but this book gives a glimpse of how complicated our lives can be. As a parent of a craniofacial kid I wanted the parent's perspective. But I think it's best that she didn't include that so the book appeals to kids.

Murphy

Murphy is 13 and is in eighth grade. He is constantly making us laugh with his crazy sense of humor and wonderful imagination. He is a great big brother and adjusted with no problems to this role. He has been an easy kid to raise from the get-go (despite the fact he entered this world 5 weeks ahead of schedule).

Harlie Caroline

Harlie is 10 and is in fourth grade. She has Goldenhar Syndrome, VACTERL Association and a lung defect that required the removal of 2 lobes on the right side. After over 50 surgeries (4 of them open heart), she is remarkably age appropriate. She is the sweetest, funniest little girl I've ever met. You can't help but fall in love with her.

Cooper

Cooper is 8 and is in third grade. He is a very talkative, high energy and affectionate little guy. He is all boy and he is a very funny kid. We are so lucky to have him!

Rooney

Rooney was born on February 5, 2012. He has been a wonderful addition to our family. He is such a great little dog and I just can't imagine life without him now! I love him so much!!!